PoTs - What has happened to her

[Nemofudge]

Long story short, things have taken a drastic turn.

Even thought the PoTs symptoms I've been experiencing have been going on since I was around 13 (i'm 28 now), in November 2023 they took a nosedive, resulting in the diagnosis of PoTs, vasovagal syncope and cardiac dysautonomia. I'm not on two types of medication, and should be thrilled after years of gaslighting and trauma that I finally have a diagnosis.

I'm confused. Not about the diagnosis time, I have Endometriosis too so am no stranger to having my pain and symptoms ignored, but why after so long has it gotten so bad. I've never been healthy, my endo can keep me on a pretty tight leash, but I seem to have lost so much in the last 5 months, more than I have in many years. I used to drive, go on walks, go to the gym. Yes, my spoon count would be effected, but I had learnt to manage it.

They took away my drivers license, so I'm feeling more of a burden than normal. I can't walk to work instead because walking for more than 15/20 has suddenly become impossible without an onslaught of symptoms. It's to the point that we've had to debate a wheelchair for tasks like doing the weekly shop. Last year I'd began accepting some sort of mobility aid for bad pain days, now all of a sudden I'm looking at mobility scooters and wheelchairs. I'm 28. I'd gotten pretty good at ignoring the stares and whispers from people who don't see anything physically wrong with me, but the looks whilst trying a wheelchair just pushed me over the edge.

I'm normally such an advocate for chronic illnesses, but right now I'm just stuck in a loop of thinking how unfair this is. I was doing okay, I had adapted to the chronically ill life finally after years of accepting it as part of me, but this? I'm constantly exhausted, my fatigue is in overdrive, I've lost my independence and don't even recognise myself.

I got married in October 2023, and I can't even recognise the person in the photos. Where did she go? She could drive, was preparing for a honeymoon where she only had to worry about the other CI's she'd gotten used to dealing with. She was on her feet most of the day, and first and foremost, she was happy.

I feel so guilty for my husband, who has had to witness and deal with more since we've been married then in the 9 years we've been together.

This isn't really a post asking for anything. Every year or so, I've ended up letting out my feelings in my Endometriosis community, but I don't have one for PoTs. I'm just upset, and lost, and struggling to once again have to accept my new normal.

[meadfoot]

Dealing with poor health is absolutely awful, no one fully understands it until they are in the midst of it. Our life is taken over in a seemingly new reality and not one we could have contemplated. The saying our health is our wealth just about covers it.

Everything we do and planned is compromised and gives an added dimension to have to deal with from the ordinary things in life to the joyful trips, fun things we wish to enjoy. So how do we come to terms with it. Sometimes we dont and cant and at those times we need a shoulder to cry on and an ear we can bend to let out our anger and frustration. Then we carry on and make the best of our current situation.

Nothing good or bad, goes on forever and there will be many joyful times and good progress to be made. You don't sound like a person to give up so fight your way through when you can and dont beat yourself up when you cant. There will be medical improvements come on stream through your life and todays solutions will be improved upon as science progresses. For now bite the bullet, surround yourself with people you love and who love you. A little progress is still progress, build on any progress you can. Life will settle never accept that todays downturn is forever because it wont be. You can, are and will be strong and resilient.

My relative age 20 is in the same pots situation as you with added complications of chronic migraine and ovary problems. A top grade ‘A’ student with a place at Cambridge to study medicine lost due to these horrid illnesses but she too will prevail as hard as it is currently. Best wishes, be strong.

[Deejay62 in reply to meadfoot]

Hi meadfoot. It’s so sad to hear what you’re going through. I haven’t got any of your illnesses myself but I have a daughter who has endometriosis and recently she had a 7 hour operation to remove it from her organs. I know the pain she suffered so I understand a little. Now you have PoTS also that is a lot to deal with. Get your wheelchair and never mind what people say, I know it’s easier said. Get one of those badges that says “invisible illnesses” if it really bothers you. That should take away the looks or comments. You have to put your safety first. It’s very difficult at such a young age but keep fighting on and let us know how you’re getting on. All the best Diane

[Blearyeyed]

I also have many chronic illnesses , including POTs , and Chronic Dysautonomia. I'm 52 now but I was gaslighted and misdiagnosed for years for the cardiac and autonomic parts of my health conditions, with the usual Anxiety but also as Epilepsy in my youth.I used to had Adenomyosis ( it's the neurological equivalent of Endometriosis) and had to had a full hysterectomy at 40, luckily I'd had two children....one birth was to try to reverse the Gynae issues!

My Dysautonomia began to have more effect on me from my late thirties, but got worse in my mid forties, when I pushed harder for help and still took three years banging heads with Cardio specialists whom just don't know anything about how to test POTs and Dysautonomia let alone treat it.

I also have atrial Fibrillation and mixed Arrhythmias now.

I have other conditions as well including, Fibromyalgia, Chronic Migraine Syndrome and Cluster Headaches, Familial HyperCholesteroleimia ,Vitamin B 12 and Folate Deficiency Anaemias and Pancreatic Enzyme Insufficiency but every one of my conditions were triggered from Ehlers Danlos Syndrome which was the last condition to be completely confirmed!!!

I haven't been able to work for sometime. I used to be a professional land artist going out into the wild creating sculptures by walking for miles and grabbing an axe or a chainsaw , not possible now.

Now I use two sticks when I walk to reduce the risk of falling if I go dizzy or have presyncope. I have a wheelchair and I'm not afraid to use it , for me it's just a sensible device that can help me do more if I go out. I have never driven but I can't use public transport or really go anywhere on my own these days.

I have to sit with my legs up or keep moving in a stable position to prevent episodes, and that's without the daily dislocations from the EDS.

The headaches and dizziness affect my vision so that along with not being able to stand for too long or move up and down means that I can't do many art options either.

The Fatigue of living with constant Tachycardia and low blood pressure, despite being able to do very much or having to move a a snails pace certainly , gets you down.

It's particularly bad when ,as you say, people look at you with a disabling illness that doesn't show physically on the outside as though there is nothing wrong with you. They don't understand your illnesses are as bad as other conditions and sometimes worse because nobody has heard of what you have.

I feel for you very much , my daughter also has the conditions as well as M.E/CFS and also had a mild heart attack at 21. She also felt like all was lost , especially as her fiancée left her because of how the condition might affect what he wanted to do.

All sounds bad. But , as you know from having other chronic health conditions , it doesn't stay that way, or stop us being ourselves.

You are still You , You are just the strong , brave unique You you've always been, just with a chronic illness.

You are at a bad dip in the stormy sea of dealing with these illnesses at the moment. I was there when I lost my independence and at times lost my mobility.

But you will endure and overcome the feelings about it and as you adjust and pace yourself , get used to the meds and try physical therapy finally shake off other people's opinions and looks and get used to using mobility aids when they are needed and things will improve, believe me, I've been there.

There are good and bad days, but on the good days, Life , even at a slower pace or doing things you didn't expect to do, Life, is still for enjoying to the full.

I'm sure your husband married you because he loves you and even if the life you planned together is going to be different to the one you imagined he's still going to be happy to get the chance to live it with you, my hubby is.

Yes. I can't go out alone and often need to use a wheelchair or take hours doing something that used to take minutes but I still love what I can do.

I can't make art in the way I used to but I've now become a photographer and have begun to get commissions , sell prints and I'm working on a project of photos trying to show what life is like living with dizziness and syncope.

I still exercise which helps me , but on my recumbent bike , on sticks when I can, or in a pool.

I have days when I can't get up and days when I still get a lot done , or bake my hubby a thank you cake.

I keep positive because I know even on the darkest days if I don't let negativity win I will get to enjoy the light , and probably more so than other people with full health whom take doing normal things for granted.

There was a time I felt as bad as you, and my daughter did too. There will be times in the future when I know I will feel bad again. But I know just like me you are going to find the ways to adapt and not just survive but enjoy life. Big hugs , Bee

[Warm-heart]

Hi - I am so sorry to hear what you are enduring, sounds so dreadful for you, so restricting on your life, and hard for others to understand when they can't see it on the outside like some broken bone. My thought for you was to look into Mast Cell Activation/ MCAS as this can worsen & certainly go hand in hand with POTS & dysautonomia. I have Mast Cell issues & there is a lot you can do to help if you know that is what it is, like addressing the triggers.

mastcellpsa.com/discovering...

Also worth looking up Dr Kelly McCann as she has a lot of info online about helping mast cell issues. And in helping reduce mast cell activation the other things that go along with it like POTS can be helped. drkellymccann.com/

Keep looking, don't give up, believe that you can get well; people with POTS do - I am ok now in that regard. Also check out things like Joe Dispenza's book 'You are the Placebo: making your mind matter' and his meditations as he deals a lot with rebalancing the autonomic nervous system, which is part of what POTS is about and how I got better by addressing the autonomic nervous system.

amazon.co.uk/You-Are-Placeb... ....Also available on audibook.

Very best wishes 💌